Hi ladies, This looks like a fun and supportive thread and I find myself in the unfortunate position of joining you!
I have had a month of scans, ct, nm bone and MRI as the NHS have cancelled 4 oncology appoints since September so onc wanted a full check up before I finally get to see him on Monday.
Yesterday I saw my onco breast surgeon for annual mammogram which was clear. But she finally put me out of my waiting and speculating misery and confirmed mets in one vertebrae T12. MRI showed no further spread so waiting for oncologistās plan for treatment.
Itās a never ending waiting game but Iāll keep myself busy this weekend wrapping presents!
Hello riverside dawn
I think we previously āmetā back in the summer when u were having a boob tidy up op in hospital ( excuse my lingo but canāt spell the medical things).
Well welcome to bone mets ā¦sorry u have more problems to face ā¦itās the disease that keeps giving. .
Hopefully now all your scans are done ( exhausting) you will be able to focus on a treatment plan ā¦maybe a blast of rads and a hormone treatment will be the first line treatment plan ? But I donāt know really ā¦as.much help as a chocolate teapot ā¦
Sending hugs xx
Hello Kate
Just to mention to ladies that dont read the hormone therapy threads ā¦Cipla brand of letrozole seems to cause more side effects than any other. .I just hope ladies donāt give up letrozole without switching to an alternative brand first ā¦I felt horrendous on it and now insist on Accord every month. There are other better brands too but I havenāt tried them to offer any good advice .
Xxx
Oh funny face ā¦I do hope it helps but at least itās winter so u can cover it up ā¦if if was summer it wouldnāt look too good with your thong leopard skin bikini !! Ha ha ā¦
So 13 more sleeps before the cement mixer is switched on for the back repair op if all goes according to plan.
Take care my friend xxx
Hi I had my first bone infusion yesterday - zometa - wasnāt feeling too great due to a cold but went ahead with infusion and second cycle of capecitabine as blood counts etc were all good. Quite poorly with flu-like symptoms and high temp during the night so ended up at hospital all day on iv anti biotics just in case - all ok now though.
My question is do you feel pain in the bones where the Mets are following infusion? I got out of bed like I was 100 yrs old this morning and I was warned my bones might feel a bit creaky but it seems to me to be where my Mets have been identified. Am I just imaging this??
Wrapping presents is on hold tonight - cuppa and a Christmas movie instead I think x
Hi ladies thank you for your warm welcome. My surgeon suggested it might be a few blasts of rads or surgical removal of the vertebrae - neither is very appealing!
Dr Google mentions complications with both - whatās your experiences?
Iām currently not on hormones as tamoxifen made me suicidal and anastrozole gave me drenching sweats 24/7, I looked like Iād been permanently caught in the rain and it was just no fun.
Hubby now blames me for the recurrence because I refused the hormones. If offered I may give it another go. Have no idea where I am menopausally, Iām 50 and was diagnosed 3 years ago. It seems like the drugs plonked me straight into menopause and flushes have calmed down so wonder if Iām out the other side?
I do agree I noticed different side effects with different brands when I did take tamoxifen.
We shall find out more tomorrow. In the meantime looks like we have a snowy Sunday to enjoy!
Ladies. .
Donāt feel guilty about not completing your treatment but focus on what is happening now ā¦
I had rads,chemo and 5 years tamoxifen. ā¦the little blighters still came back after 11 years ā¦I think itās just bad luck for some when the cancer cells hibernate with the treatment and then activate later in life ā¦
Hi Riversidedawn, please donāt beat yourself up about not completing your previous treatments, when I had my primary back in 2007 I was āvery low gradeā didnāt need chemo but had rads and was put on tamoxifen, after 12 months I really couldnāt tolerate them anymore, I became very low and just didnāt feel like me anymore so my consultant agreed I could stop taking themā¦roll on another 7 years and I have in my hips, ribs and spine!!
I totally blamed myself for this because I stopped the tamoxifen, I asked my oncologist about this and she point blank said no it isnāt because stopped them early so please donāt think that, like Carolyn has said I truly believe that it is down to pure bad luck!!
Good luck with your treatment plan.
Hugs Janette xx
Hello Benten
DONāT accept Cipla brand ā¦I think there is Teva , the real Femera and Dr Reddys ā¦I have Accord and Boots order it for me and I wonāt accept anything else ā¦itās your body and you have the choice ā¦
Iām sure Chemists every where must be stock piling Cipla as no one wants it! !
Actally. ā¦Jeanette here works in a chemist ā¦she might be able to recommend some other brands you could try ā¦
Hugs xx
Hi, sorry canāt really help with letrozole brands as I am on the branded Femara, and your prescription must say Femara for pharmacy to give you that brand.
The only explanation I can give though is that I do know that sometimes pharmacyās genuinely do struggle from time to time to get certain brands due manufacturer being out of stock, shop around though to local pharmacyās your not obligated to a certain one!! Some are more accommodating than others, where I work we really try hard to ring round all our suppliers to get certain brands but I know some (usually āchain pharmaciesā) arenāt very helpful, independents are always a better option! Sorry I canāt help anymore than that!
Hugs Janette xx
Itās the same with survival rates with secondaries. .some ladies here live with them for years ā¦some donāt survive very long ā¦we have to remember forget stats on Mr Google. .everyone is individual and responds to treatments differently. ā¦
We all get good days and bad ones ā¦swings and roundabouts xxxx
I donāt post very much, but read everyone elseās!Ā On the question of blame, I had a lumpectomy, radiotherapy, āmildā (tablets) chemotherapy and then Tamoxifen for five years.Ā Cancer was found at first mammogram in 1995.Ā After I stopped Tamoxifen I was discharged and my cancer didnāt reappear until 2015.Ā I couldnāt believe it!Ā It was in my peritoneum and then I was found to have multiple bony metatstasis which had obviously been there for some time.Ā So breast cancer can stay hidden for a long time and then be found again.Ā I do wonder if āstrongerā chemotherapy, infused, would have caught everything, but at the time I think I was thought to be at low risk, and only had the āmildā chemotherapy because I was āperi-menopausalā.Ā Otherwise I would have gone straight onto Tamoxifen.Ā However, I havenāt had any progression for at least a year, I would say more like two years.Ā I donāt think anyone can be blamed or blame themselves.Ā It is just such an insiduous little blighter.Ā We now know that it can stay hidden for many years and none of us can be safe from it.Ā We just have to live our lives as fully as we can and be aware we need to be vigilant (which I wasnāt).
On the hormone therapy thread. .a lady recommends āSandozā brand of letrozole as itās made by the original Femera and nearest to the original ā¦she says she feels much better .
Hope it helps xx
So I saw the oncologist yesterday who confirmed a 2-3cm tumour in vertebrae T12 and discussed various options for treatment. Then he dropped the bombshell that the MRI showed something in my pelvis/pubic bone too, so that changes treatment options. Heās booking another much more detailed MRI at Mount Vernon cancer centre which hopefully will happen before Christmas.
Came away with a bag of hormones which Iām going to try again and see what SEs I get this time. Must have a look at the brand namesā¦
My heart goes out to you as these bombshells keep getting dropped on you ā¦itās always a shock to hear about extra things when u r still trying to take everything else in ā¦
Up to now I thought I was just bone mets but oncologist sort of mentioned a few weeks ago the adrenal glands were responding well with letrozole. .I had never heard of these ā¦thought they were in my b u m hence the reason i fidget so much until I Googled where they are !! Sometimes ignorance is bliss though ā¦I try not to Google too much about stats etc ā¦this disease is what it is ā¦
Xxxx
No Bentsen, if you want you can read the post a bit further down
after I had been on it for a few years, I found the pharmacy would get the cheapest, did some research and spotted Sandoz was made by the same company - Ā then Boots were getting the Sandoz one for me on requestā¦they wonāt now. Sorry
I turned up to find out date for lumpectomy to be told it had spread to bones. Am now scared and depressed. Treatment is letrazole, palbociclib and biphosphonate infusions. The oncologist and the nurse were very gloomy and I got the impression that the prognosis was not good. I want to be optimistic (I am by nature) but finding it not possible with this hanging over me. Some positive feedback would be most welcome.Ā